On the back of Saturday nights new worrying symptoms, things have progressed in a different way. I referred to the seering oral pain which has not abated. I woke after 2 hours yesterday a.m… to find my gum tissue had bubbled in one area of the mouth which was extremely tender with what looks like further recession. Eating anything is very painful which is followed by all of the digestive and intolerance issues. Last night the same thing happened, I can feel a new recess in another part of the gum and the roof of my mouth is extremely tender I liken it to the feeling of when you burn your gums after heat exposure and its across the full mouth The global pain in my muscular and skeletal system is out of the park, it feels as though my whole body is being attacked with shrinkage occurring everywhere I’ve dropped a shoe size, my hands are even smaller, feminine and aged like an old woman’s, all of my clothes are too big, even small size shirts are loose when trying them on in stores… I’ve spent a small fortune over the last few months on facial fillers to try to disguise the tissue loss and hollow/junkie like look. My brain function is deteriorating and my emotional state is one of constant trauma/terror because of the neorosteriod problem. I’m going to visit my sister in a few weeks and have booked assisted travel with losing the ability to make sense of my surroundings and to think on my feet. My short term memory has also took a further hit recently and errors are becoming more common place. I’m going in part to be with her for her unflinching support whilst also trying to shield my son from him witnessing the brutality of all of this and also to give my wife a break. Trying to hide this is a constant battle which makes the situation even more difficult. I have constant waves of pain in the brain tissue too. Walking in my stocking feet is so painful as its bone on skin with no padding. My knee caps and surrounding tissue have become brittle and smaller, I’ve become very weak physically with next to no strength because of the inability of the body to utilise testosterone and other hormones. My eyesight is changing throughout the day with floaters, blurriness, dryness, redness, pain, then at times normal Sebaceous glands and other bodily systems are functioning in a similar way. Most of you know I have a lot more symptoms than what I’ve described here today. Drs and consultants recognise the changes and reported symptoms but tell me the condition is poorly understood, state there’s no treatment protocols and don’t know what to do so in turn discharge me one by one. I hope my recent mail to the MHRA sighting referenced evidence and our struggles to get any help will assist in the push towards a change of direction, At the least I’m leaving a footprint for when this finally gets recognised with the drug being removed or at least appropriately risk’d with warnings. The Foundation’s petition/lawsuit to the FDA will prove to be a major stepping stone in this battle. I also provide updates on here in order to record my path and I’m re assured that others do the same because the world needs to know what happened… We will all be exonerated one day. I had a call from a pastor ive got to know from SA ( he’s an amazing guy and originally from the uk) he re assured me that healing will take place and reminded me of my faith and what I need to do to make this happen. While we’ve been abandoned by so many God will always be by our side and in times of suffering he’s even closer we will prevail. I have lasted this long, and intend to see this through, no matter how bad thiings get suicide is not the answer. It only serves to give Merck another victory. There remains a degree of optimism even for the most severely hit. More Drs are speaking out, awareness is growing, the FDA is being squeezed, and we have upcoming research via donations which is largely from sufferers and their families. After all of these lost years things are finally changing, never give up, too many lives have already been lost and destroyed.
5 posts were merged into an existing topic: LazarusRy’s PFS journey